10 Questions I’ve Been Asked About My Ileostomy

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Even though many of my friends and family have gone through the process with me, I still get a lot of questions about my ostomy. Thankfully my people aren’t afraid to ask those weird or outrageous questions, so I can embrace them and answer to the best of my ability.

Here are the most asked questions I've had about living with an ileostomy:

1 - Did they remove the whole intestine, or just part?

They removed my entire large intestine (colon). The disease affected the entire organ and it was too sick to remain in my body. Technically the procedure was called a sub-total colectomy because the surgeon left my rectum in place, which will allow for the option to have J-pouch surgery down the road.

2 - What’s a stoma?

The stoma is the opening in which my small intestine was pulled through onto my stomach. Mine is on the right side of my tummy, just below my bellybutton.

3 - What does the stoma feel like?

The actual stoma does not have nerve endings so I can’t feel that. There is some irritation around the stoma sight which I do feel as it’s a little bit painful and itchy. If that was healed it wouldn’t really feel like anything. Sometimes I can feel a gurgling sensation as either waste or gas is eliminated.

4 - Do you have the urge to go?

I can’t feel when I’m going to have a bowel movement and aside from a little gurgling, I don't feel when it’s happening. I know I have to empty the bag either when I can visually see it’s getting full, or from the weight of it.

5 - Do you still fart?

Gas is also eliminated through the stoma so I basically fart from my tummy. I can’t feel it coming and I can’t control it but it sounds like a gurgling, grumble and can potentially be fairly loud. I also need to monitor the air in the bag and make sure it doesn’t fill up.

6 - What happens to your butt?

It’s still there. Now nothing comes out of it though.

7 - Do you still need to take medication?

Nope not right now! Before I was taking about 25 pills a day. Now other than my supplements, nothing.

8 – Will you have an ileostomy for the rest of your life?

No. I’ve elected to have J-pouch surgery. I can try to explain it to the best of my knowledge. Basically instead of the small intestine sticking out from my stomach, they’re going to reconstruct it to attach to the rectum that was left in from the first surgery. They will bring it down and loop it to form what looks like a “J” creating an internal pouch. This is where waste will collect until I can eliminate though the anus like normal.

9 - Can you still pee?

Everything about my urination is normal and always has been.

10 - Do you feel better?


Stacey Willins

Connect with Stacey at IBDBaggageClaim.com